Autoimmune Hemolytic Anemia | My Story
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- Опубликовано: 3 фев 2019
- More information on Autoimmune Hemolytic Anemia:
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My name is Samantha Wayne and I have been creating advocacy videos on RUclips since 2009. I created Live Hope Lupus in order to create a space where those with chronic illnesses could get information and support. Please subscribe to follow me along on this journey!
#hemolyticanemia #lupus #jaundice
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My daughter got diagnosed this August on her birthday, her hemoglobin was at 3.2, we are home now, she is 7 years old....
Bless you all...
What's the long term treatment? And how long did it take to come home?
You may save someone's life with this video, someone will see it that is going thru the same thing and get help, keep making them good bless you
Wow.. I'm sorry hang in there. My grandmother has suffer from anemia her whole life with multiple blood transfusions. She hasn't been diagnosed with lupus, but her sister had lupus. I have Sjogrens not lupus. She is still going and kicking with health issues here and there. Hang in there! 🙏
I was diagnosed with this when I was 14 years old! I was at my friends sleeping over and I woke up super light headed that turned into I couldn’t look at light it hurt my eyes I was getting dizzy but I blew it off then I started vomiting and it was all staying to make me think I had the flu or something. But then I got SUPER PALE so my friend called a amulence and my mom met me there I had to get a blood transfusions at a local hospital then they transfers me to another one and that’s were I was diagnosed and had my retuxtoon treatment.
I absolutely know how you feel. I was diagnosed with exactly the same disease last month and stayed in the hospital for six days. My hemoglobin dropped to as low as 7.4 g/dl. Didn't need transfusion but had steroids stuck to my IV during my entire stay. I cried when I learned about my illness because I've always thought I was healthy; I have an active lifestyle and I don't eat junk. Realised this disease doesn't choose anyone. What sucks is when people assume that you're faking it all since it's an invisible illness. It's so important to educate ourselves and others about our own illnesses. I hope you're feeling much better now though!
I am! I hope you are starting to feel better. It took me 3 months to start feeling "me" again.
I was diagnosed in September and that's exactly how I felt the doctor's were scared because my hemoglobin dropped to 5 when they found out. I'm happy to know that I'm not alone (wouldn't wish this on anyone) but its nice to see others understand.
@@ahseratbaldwin2527 hey plz can you guide me. Like what all one needs to do if one has autoimmune hemolytic anemia ? Blood transfusion or what else ? My father is diagnosed with the same. And I need to know do they do bone marrow biopsy also to diagnose it ? I dont want my father to undergo that due to age factor. Let me know plz
@@joyoflearning2124 i don't think I'm the best person you should be asking. A doctor can test for it and will decide if medications, surgery or a blood transfusion is the best answer
Thank you for sharing this. I just couldn't control my tears when I see that someone is actually the same as me. I wish I can have the energy to record my adventure. My lupus was diagnosed 5 years ago and my AIHA was diagnosed a yr after with a bone marrow exam. I have flare ups from time to time. I've had 4 blood transfusion because of the attack and had been on and off prednisone because I'm unwilling to remove my spleen. I'm on Chloroquine now because Plaquenil made me itchy. It is true that it's hard to find the matching antibody when transfusion is needed. I also have antiphospholipid antibody syndrome. With this, I have had 6 blood clots in my body through the past few years so now blood thinner is my supplement to prevent clotting again. Today Im feeling crappy again because I suddenly felt so nauseous again. It must be my lupus again. Anyways, let's stay strong together. 🤜🏻🤛🏻
Stumbled upon your channel yesterday. It’s so refreshing to see another person that I can relate to that has TMJ. Sending prayers and love your way. ♥️
What can I say but hugs to you and you continue to be an encouragement.
My moyher is also autoimmune hemolytic anemia. She has the disease since 2014. Doctors thouth the disease is CLL but all biopsies were clear. We still don't know what causes. Her treatment is prednizol and rituksimab
It’s great to see another chronic illness warrior on RUclips sharing their story
Hi! Thank you for your story. Just found out my hubby has this. Trying to learn as much as I can. Praying for your daily strength.
Hi sweet lady!
I’ve been looking for some people to connect with as I was just Diagnosed with this creeper disease in March…
I’d love to connect and get to know your story as this disease has me feeling more alone than ever before and could really use a friend to lean into. ❤️
Either way, I wanted to share my story to maybe help you not feel so alone. ❤️
Starting in mid February….(2024)
For about 2 weeks I started to feel AWFUL. Never have had anything other than a Diabetes Diagnosis last summer. (2023) Since then I’ve been on a Keto type diet and have lost 50 lbs since this past January of 2024. (Sadly.. most of it came from being so severely sick)
However, after the first week of feeling weak, lethargic and fatigued… I went to my Dr’s office and ordered a urinalysis because I was drinking close to a gallon of water a day and noticed my urine was darker than I’ve ever seen before…even just dehydrated… I get a call the next day and they told me I was fine to just drink more water… 🤯
So I continued to drink as much as possible, even started the liquid IV drinks once daily and nothing worked for the next week. So here we are, 2 weeks of feeling like 💩… and I wake up at 6am after my husband had already left and gone to work at 4 and an hr’s drive away… I was hungry… first time in 2 days… so I got up, walked to my 10x10 bedrooms doorway and almost collapsed my body was so weak and out of breath… leaning against the doorway I thought… “This isn’t right…”
I went to the restroom another few feet across the living room and honestly thought I was about to pass out by the time I could sit and go potty. 😩
My thought was exactly…. “This is it… I’m going to die urinating on the throne..”
I had to have actually blacked out for a minute because I honestly do not remember finishing up in there… all I remember is coming from the bathroom walking about 7ft to the couch end, and losing every bit of strength upon falling to the couch praying I was close enough.
Another black out spell or maybe falling asleep… I managed to pick myself up off the couch and shuffle my way to the kitchen where I hurriedly grabbed the cereal, milk, spoon and bowl, taking rest breaks between each item needed at the counter/bar side with a stool. I somehow finished my cereal and managed to get everything to the sink, fridge and cabinet before taking another break, and finally getting myself back to the couch, then to the bed.
At that point my head was spinning so bad I had no other option but to collapse on the bed and go back to sleep. This was unlike any hangover or flu I had EVER had.
I finally woke up about 4 hours later and tried to get to the bathroom again and was almost unsuccessful. 🤦🏽♀️
I finally called my mom since she was WFH with her employer and she told me I def needed to get to the hospital.
Called the hubby, he immediately came home as quick as he could and from there I remember nothing.
By the time he got home, helped me get dressed and got us loaded into the car, to the hospital in Nashville, (Shoutout to St Thomas Midtown) and into an emergency room, several Nurses, ER Dr’s and other Dr’s across the hospital had already heard about me and how terrible I looked. (Jaundice had set in so severely the dr’s were telling my poor family if I had been anymore yellow I’d have been glowing.)
My parents got there around 6-7pm and they as well as my husband & the Dr’s thought I was laying in my deathbed.
The Hematologists came in a little after my parents got there and said “We need to get her into a room and get some blood into her and some Steroids because her Hemoglobin is at a 4.1 🤯😩
From there, I was admitted and in a room within about an hour… the blood came in from the Red Cross down the rd about 3-4 hr’s after that order had been put in and for 3 days I was getting Transfusions only for them to be telling me I was killing all that new blood off as quick as I was killing my own before the transfusions.
They finally found out after more testing that I was a different breed and needed a special kind of blood that had been washed with a solution and frozen for at least 10 years only to be thawed and used within a few hours or else the Transfusion wouldn’t work just as the 9 bags previously… so I had 3 bags of that special blood and finally something was starting to work between the new blood and steroids because I had gone up to a 4.8.(In the midst of ALL of that, I had to have a Bone Marrow Biopsy from my hip to see if I had MDS. (Thankfully that was a no, however I have some weird cells the pathologists are keeping an eye on every month when I give more blood for testing.)
About 5 days into my stay, they started me on 2 rounds of IVIG therapy because my hemoglobin was not going up as quickly as Dr wanted.
After that, they waited for the IVIG to work with the steroids and transfusions for about 4 days where I finally managed to get to the low 9’s and they allowed me to leave with weekly check ins with the dr for a month and a half, (4 of those weeks were Oncology Rituximab treatments..😭 Dr was still very unhappy about my hemoglobin counts), then biweekly and now monthly…
It’s been 4 months coming up on July 9th and I am still not even close to remission from what I understand. 💔😔
Still at a low 10 hemoglobin wise and still struggling with these STUPID steroids. 😩😭
Dr is thinking that if my hemoglobin doesn’t get back to an 11 or higher next appointment we’ll be forced to look at a Splenectomy in the coming months which only means more complications later on wether it’s GI issues or being even more Immunocompromised than I already am. 🤦🏽♀️😞
But I’m still fighting… Rituxin side effects and all.
I hope you’re doing better on your journey as I see this was years ago…. And I PRAY you’re in remission. ❤️
I’d love to connect with you if you’d like 😊
Take care!
This is going to be kind of long I’m sorry. I’m sure you probably won’t see this since it’s been 2 years since you posted this video but you are the first person I have seen with Hemolytic Anemia. The lowest my hemoglobins were was 4.8. They started giving me iv steroids, they were giving me 1,000 mg. I had passed out earlier that day while going to the hospital and was just not really understanding what was happening around me. I was in the ER for around 8 hours. At this point my hemoglobins were 5.5. I was going to be transferred to the cancer and blood disorder floor. I had one infusion, a CT scan, and one transfusion with retux. All together I was in the hospital for 16 days. When I was released my hemoglobins where at 8.5. It has been almost 6 months and I am still recovering. Because of the high doses of prednisone I got AVN which is Avascular necrosis. It means my bones weren’t getting enough oxygen. At the current moment I have idiopathic hemolytic anemia so I don’t know if this will happen again and it makes me kind of scared. I hope by posting this comment someone will see this so I don’t have to feel so alone. I almost have enough immune system to get the vaccine. I have almost made a full recovery. Again I’m so sorry for the long comment. I don’t even know if you will see this but if you do thank you for reading.
Hey Elijah. I'm so sorry you are going through this. It is a scary experience and you experienced a lot in a short amount of time. Sorry to hear about the avascular necrosis, prednisone is life-saving but a horrible drug long-term and on high doses.
I don't have much to say but that my hemolytic anemia has been under control since early 2019. I am still regularly checking my RBC's but overall it is under control. I hope this gives you some hope and that you can get there as well. It seems you are on the right track! They also had me on other medications in order to wean me off the pred. If your hemolytic anemia flares again, it might be helpful to look into that.
I had it in 2006. I went to urgent care after I noticed jaundice like you and was called by a hematologist and told to go to the ER. I didn’t have an underlying condition but I did have a tetanus shot 2 months before that because I stepped on a nail. One of my doctors said he didn’t think the Hemolytic anemia was from the tetanus shot. My hgb kept getting lower. I eventually had to have 5 or 6 blood transfusions. My hgb was still only at 7ish. It would go up and down. After 2 weeks they decided to give me rituximab treatments. That helped and I’ve been fine ever since. Mine was idiopathic. Good luck to you!!!
Wow, I'm so glad I found you because I will be getting tested next month for this. At first they tested me for osteoporosis but they think I have this. I just got my results last week (3/6/20). I don't have Lupus but I have diabetes and like i said, have been scheduled for more testing. I subscribed to your channel and I will keep watching you, to learn more, Thank you.
Prayers and love to you hun you are a beautiful person , and strong , find one thing each day that makes you happy and smile a lot . take care of you :)
Great advice! :)
Hi. I'm LaToya McClendon. I completely sympathize with you and pray that you stay healthy. I too have hemolytic anemia. Right now, my hemoglobin level is 6. I have had several blood transfusions and treatments. I have several conditions as well, mostly autoimmune related. Some of them are are sjogrens disease, lupus, raynauds, graves disease, hyperthyroidism, rheumatoid arthritis and hemolytic anemia. So I can understand how you feel on a daily basis. Your videos are so helpful to me. Take care of yourself.
Samantha I understand what you're going through, I was diagnosed at 12 yrs old that I have ITP ( idiopathic thrombocytopenia perpura) otherwise known as a Hemophiliac, I remember the blood transfusions that were done daily, all the prednisone the doctors prescribed made me gain weight I went from a 70 pound weakling to 250in one month, over the years I've had my share of illnesses but I'm still kicking ☺ I'm praying for you , stay strong and God Bless you are beautiful
Thank you for sharing! It helps to know I'm not alone in this.
Love your videos have a blessed day
Thanks for sharing your story!
I was just diagnosed with hemolytic autoimmune enema in April. Went on with my hemoglobin level of 4.2. I did the whole prednisone and stepped down until I wasn't taking it anymore and then I got sick with covid and went right back into another flare. Just got out of the hospital 2 days ago. After another 4-day stay. I think the worst part is not knowing why.
Thank you for shedding light on this! A lot of people do not understand how dangerous this disease is. I have this too from my bone marrow transplant. Over the summer I ended up in the ICU with hemoglobin of 2.1. My hematologist came by at midnight because he was concerned I wasn’t going to make it. I’ve had many many transfusions and my body just attacks the new blood. Right now I’m in the 7’s. They won’t transfuse me until I’m in the low 6’s. I’ve been bed bound for 4 months now. Rituxan and Soliris chemo did not help. I’m on Tacrolimus but have been for 4 years. I have a palliative care team that comes to my home and will also provide hospice if it comes to that. I truly appreciate your video and I really hope you continue to feel better and your Hgb stays at a healthy number! God bless! ♥️
How's your health now Erica..?
Firstly, can I come congratulate you and your husband on your wonderful news of your pregnancy! Pray everything goes well for you! I was diagnosed with AIHA a year ago. Oral steroids helped temporarily, but then when my haemaglobin dropped to 7.4 I had a course of 4 x weekly rituximab infusions in April/May last year (2023) Again, these rose my haemoglobin to 11.4 and I felt a lot better but three months later it dropped again too 10.4. My haematologist ordered a follow-up for three months, so I see him in three weeks, but I know it’s dropped again as I have other symptoms -tired, dark urine, palor and yellowing eyes. I do find some some days worse than others but I’ve been told I will likely need to start long-term immuno suppression if it has dropped further with a chemotherapy drug. I do not have lupus or any other condition except for underactive thyroid. It’s just nice to be able to talk to somebody that also has the same condition. Keep well and take care.❤
Recently I was also diagnosed with the Hemolytic Anemia (in December 2018), my blood counts dropped so fast to 4.9, and I had 14 blood transfusions. This was so far the worst experience of my life. I was discharged from the hospital with 180mg of Prednisone (In January), and now I am free from it, but the side effects are still here! I am still trying to understand my disease, and how this will affect my future, it is scary. My sister had a mild manifestation of this anemia as well, 6 years ago so in our case we think it’s genetic. If you have time to talk to me in private, I would love to share more, I fell that I need to talk more about what happened with me only 3 months ago. I am Brazilian but I live in Hawaii now. Thank you SO MUCH for your video.
I also have AHA. I was released from hospital last saturday. spent 5 days in ICU. My hematocrit dropped down to 7%. I am available to chat and share if you like.
What's the long term treatment? My 1.8 month old has a 4.4 hb and undergoing the second transfusion
How many yrs your AIHA?
I was diagnosed with leukaemia in 2015, been though a bone marrow transplant and also got diagnosed with autoimmune haemolytic anemia since September last year. Taking prednisolone since May 2018. I’ve got admitted in hospital once with 42 hb. Now is 80 but I’m still struggling. So hard to feel tired all the time, dizzy, heart pounding so fast... lost count of blood transfusions I had. And with all of this you need to try to accept yourself with all the side effects from steroids. Thanks for sharing your story. Simone
I just got diagnosed with AIHA, Hashimotos. 5 transfusions, 1 Rituxin. 2nd Rituxin will be June 8, 2020. Feeling pretty good right now.
Hello my name is roxann , I was diagnosed with autoimmune hemolytic anemia when I was 15 years old now I am 32 I've been dealing with it for half of my life already but I did get my sting removed I am still going through it as on a daily basis right now I am also taking prednisone and cytoxan with folic acid the B12 I was diagnosed with anxiety as well due to the depression and and stuff like that because come with the autoimmune hemolytic anemia I also had numerous of blood transfusions hospital stays sometimes I wear two to three weeks at a time sopot where I felt like a guinea pig because at the point sometimes I didn't know what was wrong they couldn't find out what was happening until multiple blood transfusions numerous times stay in the hospital for two to three weeks at timesI would love to tell you more about my story I'm so glad that I found someone that can relate to what I'm going through for a long time I didn't get any answers from anyone I did never knew anyone or heard of anyone that had this same diagnosis
wow ....ended up in hospital 3/13 for 13 days. Went in with my hmg at 3.3. Got 2 bags transfusions and ivig treatments. On 90 mg of prednisone going on third week and never been on this high level steroids. Got a blood clot while in there and so now on blood thinners which is just adding to it. The side effects are horrible. I have had lupus for 10 years and this just popped up. We’ll go through it together girl. God bless you! FYI. Went to Er on my own because my rheumatologist I had for 10 years retired and didn’t replace him. Never had any numbers showing concern for this in previous 3-4 routine blood tests I had a year for that whole 10 years. I assumed I was out of the woods for my lupus doing anything other than my normal flares and not affecting any serious organs. Most I had was vasculitis and pleurisy.
I’m sorry about your new diagnosis. I understand how you feel about being worried about how rare it is. I don’t have lupus, my test results just came back negative. But I’ve been diagnosed with 2 rare diseases. Idiopathic Granulomatous Mastitis and Sweets Syndrome. It’s scary to think you have a rare disease. Especially idiopathic ones. Stay strong girl. We are here for you ❤️
Thanks for sharing your story. Recently diagnosed with AIHA. Stupidly waited until I was the color of Homer Simpson and unable to walk 20yrd without becoming breathless before I went to the Doctors. Particularly idiotic in my case as we have the National Health Service in the UK. Currently part way reducing steroids down from 100mg to 75mg with change to 50mg next week.
Red Blood cell up from 67/130 to 112/130 and awaiting results of CT scan to see if they can diagnose what set it off.
I hope your condition stabilised and well! :-)
It is never easy to get used to a new illness ever. I’m back on the doctors visits and waiting and worrying.
I woke up and my hand was yellow. My tongue was yellow. Not my eyes. All tests came back normal except my hemoglobin HCV, HCH and HCHC levels were all low. I’m anemic fairly often. They don’t know yet why I was jaundice. 🤷♀️ possibly a reaction to antibiotics. I have more appointments. I’m grateful for my healthy liver and gallbladder.
I am sorry you have to take this journey figuring out a new autoimmune disease, no one should ever expect that to be easy for you just because you’ve done it before.
Update: mono...I have mono.
I have iron deficient anemia. Still awaiting a lupus diagnosis, but I'm pretty sure I have SLE. My appt is in 10 days. So far, I've had an iron infusion, and it looks like I'll need another one in a few months. Once the iron infusion brought my hemoglobin back up, it didn't fix the tiredness at all, as that is it was the lupus causing the tiredness, not the lack of RBC.
I have the same problem since many years
What I can advise you is to taking L-carnitine daily is the perfect way to avoid the tiredness
Good luck 🍀👍
Hi ,
I’m glad I’m not alone I’m going to share my story 💜
Can u tell me the diet plan for autoimmune hemolytic animiea because my dad is suffering from it
On wed I did benlysta for the first time then I got a call from the nurse saying my hemoglobin was low now gonna see what the next step is with my physician.
I had accidentally gotten diagnosed with this last year. Went in for a hysterectomy and the blood bank couldn't match me because of it. I was fine until my birthday last month when my hemoglobin levels dropped to a 2.6 and ended up in the ICU for over a week
Hi sis.... How r u now...
@@Dr.Harini_Sakthivel I'm actually doing really good now.. they just diagnosed me with lupus and have been getting treated for it which helps keep it under control
Thankyou for sharing. Did your blood pressure change?
Hi lovely.. what are you views on holistic measures, intensive diets and oxygen therapy (removal of acid in the body, etc.) I may not be doing it justice by how I'm asking, but yeah. Have you looked into it?
Hi Samantha. My prayers are with you. I had pernicious anemia but my Rheumatologist was reluctant to treat it as it was caused by my lupus. Why is lupus such a bitch? It's taken me 9 years to finally accept it. And your channel and connecting with fellow lupus suffers is definitely helping me out. Thank you so much.
#for those who find it difficult to accept their lupus. Someone advised me to see it as your very naughty child. Continuously misbehaving but it's still part of you. I became so compassionate with myself after hearing this. I wish you easy and swift healing Samantha.take care.x
Aziza K I can’t believe he didn’t want to treat it. My pernicious anemia caused neuropathy in my hands , feet and my face I was also getting lightheaded and felt like I would pass out when I stood up and my heart would race . The hematologist has me taking b12 weekly for life.
@@mrserika1803 yes, I was hospitalised at the time and was really confused. So my mum kept fighting with him to prescribe me vitamin B12 because blood tests showed a severe deficiency. I actually take folic acid now but my neuropathy hasn't resolved. I've had the neuropathy for over a year now. Do you take vitamin B12 as injection or sublingual? Because I heard the off the counter tablets we buy are not as easily absorbed.
As it helped the neuropathy? Are you still vitamin B12 deficient? Thank you so much Erika for linking the neuropathy to vitamin B12 deficiency. I'll definitely ask my GP about it because he wants to start me on Gabapentin to treat the neuropathy. I feel so enlightened- this is why I love Samantha's channel so much!!
i just learn this disorder in my medical study, be tough and surely you will get well and better day by day :)
Thank you so much for sharing! I was just diagnosed on my birthday Jan 29th 2020 and spent 8 days inpatient. I'm still on 100mg of steroids as my counts aren't stable yet. I'm so happy to hear you're doing better. I also have a rare autoimmune liver disease (PSC) as well so I totally understand how you feel getting yet another diagnosis. Thank you again for bringing light to this rarity its hard to get info on this specific type. Hope you continue to feel stronger.
I have this. I been anemic since I was a kid but got diagnosed with sjogrens in my early 30s.
Hi my name is Maria and I've been diagnosed recently with exactly the same disease. I also have discoid lupus which I've been taking hydroxychloroquine200 mg for the past 15 years.
When the diagnosis of hemolific anemi6 was made they put me on steroids for 7 weeks and it brought my hemoglobin up slightly. But as the steroids wear off the hemoglobin is dropping agaiin
Retuximab is an alternative treatment but the side effects are not ideal. Hoping to find some type of plant based medicines that might help.
Good luck to you.
Thank you for these videos, they are so helpful. I wanted to share some videos I found about autoimmune toxins in everyday products and foods, etc. This info helped him to reverse his autoimmunity. I thought you and your subscribers should have access to this info.
Jamie - plz let me know more.
Hi. Yeah I have the same AIHA had for a year now. Hb low went yesterday n has come back. So I gotta start Rituximab treatment. Gotta try to get hb up. Before treatment. Have got so many health issues n am dreading mt heamatologist said in AIHA morphs into a cancer. But ct mri and numerous scans have been OK. Thanks for your video. Hope you are getting stronger. Just gotta stop these side effects of prednisalone 80mg daily n start again today. As was getting hb higher but weaning off has made it rear its ugly head again. Grrrrr
Hi! Thank you for sharing your story. My Dr.just told me I am severely anemic and I have to do few tests to find out. I am freaking out what if it is cancer. My mom had anaemia too but mine is autoimmune bcos my immune system is attacking the red blood cells.This is new to me.I hope I will only have to do blood transfusion.
I also, have AIHA. I thought I had the flu and hemoglobin was 5.9. Lowest it has been was 4. I was diagnosed over 3 yrs ago. Hospitalized every 4-6 and received 40+ units of blood. Finally they decided to take my spleen out which didnt work and my next option was rituxan. With that, I have been stable for a little over a year now!! Stay positive and have faith! ❤
With the spleen cut, are there any side effects? Like, spleen is the most important for regenerating of your body right. I too have hemolytic anemia and the doctor said they would see to cut the spleen off which I never agreed to and I still have AIHA and looking for the cure. I wanna hear out your story of diagnosis.
After take out your spleen.you feel better?your eyes and face had been yellow?
I hope you'll get well very soon i can relate to you so well..fuck this diseases
My haemoglobin level dropped to 4.8 last year October.
I always encountered fatigue, frequent urination, yellowish eyes. The day of attack i was down with fever of 103farenheit. After 2 units of blood transfusion, slowly my haemoglobin level increased. After 10 days I was released from hospital. The journey was painful and frightening specially during the bone marrow testing, MRI and pet CT scan during that condition when you are already weak. As on date I am 10mg prednisolone, 5mg folic acid, 500mg calcium, and 100 mg Imuran. Almost 11months have gone. The condition gad a toll on my gall bladder because hemolytic anemia causes gall stone due to accumulation of bile salts reacting with calcium carbonate. In addition, i feel nausea, cramps in both of my feet as well as little hunger. My body weight is 96kg and I cannot work hard because it causes fatigue and tiredness. I do not know what is ahead of me in future. I am 32 years old from India. I will be looking for suggestions from your end.
You now good or no?
I have diagnosed with hemolytic anemia as well. & I m facing issues of not remembering things properly, even those simple simple points out there in studies to my daily basis things, m just keep forgetting it, so after getting cure from this disease can it be okk, i will be able to recall things again & keep it in mind or not ?. Plz answer.
Hi I’m Gaby! I’m so glad I found your video. I was diagnosed with AIHA too. I’m actually waiting to go and get my like 13th transfusion. My hemoglobin was 7.3 two days ago so they wouldn’t give me the transfusion then. Now I have to wait for it to drop under 7. I was diagnosed with lupus 6 yrs ago. Kidney disease a year ago. I’m currently waiting to get on the transplant list. I get an injection of Aranesp to try and stimulate blood production but it doesn’t seem to be working. I’m so tired of all of this. I just want to enjoy my kids! I want to be a normal mom to them.
Watch how to reverse autoimmune diseases with food
@@salviakk3830 do you have a link or details? Would greatly appreciate it
My sister in law was also diagnosed of auto immune anemia but sad to say she was already pass away last August 19 2020
😢
I have this I was 2 pints short of blood Dr told me one more night at home I would have died I also have pernasious anemia I had jondice I had a blood transfussion and bone marrow test
Who knew looking up a few symptoms lead me to you? And we’re practically neighbors! Small world. Anyway, I’ve had Lupus SLE for about 6 years now and had always had blood issues. But recently I’ve experienced my first back to back transfusion (2 weeks apart) hemoglobin was 7 the first time then after transfusion was a 8.8. Second time my hemoglobin was a 6.5, lowered to about 5.4, then after the next transfusion it was a 7.3 and a couple hours of debating about whether or not I needed another unit it went up to a 7.8. Both visits we shared the same symptoms (every time I’d walk even a little I’d feel as though I was sprinting) and the whole “gee Red Cross doesn’t seem to have anything for you” spiel, but usually with my lupus it likes to give me Pericarditis when I flare. So I was almost positive it was happening again. But this time was different; only blood related. After this second time around I still don’t feel that great. Have a bit of the yellowing in the corners of my eyes as well as the dark urine no matter how much I hydrate. This recent transfusion marked my 10th transfusion since I’ve been diagnosed with lupus. I wasn’t having blood issues for some time; so long that I couldn’t tell you the last time I saw a hematologist. This past year was the first time in maybe 2ish years where I’ve been pretty great. Now I’m ringing all these Doctors from the past and they are usually surprised to hear from me after so long. One thing I’m not particularly excited about was when you mentioned they put you on 60mg of Prednisone. I’ve been tapering off pred for yearssss. I’ve had such a bad experience with high doses of prednisone where I’m not sure I’m mentally prepared to even have that thrown at me as an option... but a lot of the symptoms with what’s happening with my “vanishing blood” leads me back to hemolytic anemia. Thanks for this video it’s super helpful. Apologies for how much I ramble lol
Definitely mention hemolytic anemia to rule it out. The yellowing of the eyes concerns me. You have had quite the journey with the transfusions! I hope you get it all figured out soon.
Live Hope Lupus Update: currently in the hospital (this time with my new hematologist on board) and after this 3rd Transfusion of the year I too have been diagnosed with Autoimmune hemolytic anemia. Thanks for your help!
@@moviegoer94 welcome to the AIHA club! I'm finding there isn't many of us but I'm glad you were able to figure out what was really going on. Hang in there.
Live Hope Lupus yea I’m not really excited about this high dose pred situation but I’m hoping it’ll make me feel somewhat better. I’ll be on 60mg twice a day until I see my New hematologist around the 5th. I’ve never had this much of a high dose I’m just so ready to taper off already bleh lol you mentioned a FB group you found too. I think I may have found it earlier today. Hoping they approve me to join soon.
I have aplastic anemia from the lupus. Barely produce platelets, hemoglobin is low as well. Lived on blood transfusions for a year and a half. Doing much better now with new meds. I can relate. I went through all that. And now live with low blood levels and they say they will never be normal because lupus damaged my bone marrow.
Hi Ericka . What meds they gave you?
@@esheskinner9508 hello I have medicine for these contact me urgently
Thank you for your video, I was diagnosed 2 weeks ago. I went into the ER with a hemoglobin of7.4, they gave me the choice of iron supplements or blood transfusion, I chose to go home. 3 days later I was back with a hemoglobin of 5.5, received 3 units of blood, started steroids went home 2 days later. I only made it 3 mores days and I was right back in the ER at a5 hemoglobin. Had to be transfused again and started immunoglobulin therapy. My counts are still dropping and I was supposed to start Rituximab on Tuesday but my blood has some markers in it. It was confusing. I get more blood tomorrow and a CT scan. I had a bone biopsy too. Not sure what is next for me. Just hoping I can stabilize soon. They think a tooth infection or antibiotics caused the reaction. I have to take amoxicillin before all my dental appointments because I had strep throat that went to my heart when I was 3. Thank you again for your video! ❤️
Misstallica 2546. I'm sorry to hear about your experience. Have you heard of UV light treatments/Ozone therapy. I have used it, and it has helped me a lot. I have AIHA, and my hemoglobin dropped in June to 4.7. It's now 12.9 and a couple of weeks ago it was 14.2. I'm titrating down from 60 mg in June 2020. I'm now on 5mg. I'll be at 2mg this upcoming Tuesday. My experience with UV/Ozone has been wonderful. Maybe you would benefit from it. I just wanted to share.
@@stevengraham3278 Hi can you share more about the ozone therapy
@@stevengraham3278 Hi, hope you are keeping well. Please are you able to update us on the therapy as I have a relative who has this condition and is struggling, thank you
I have the same diagnosis. My h and h were 4 and 9 my first time. My journey would take me two days to write. Ask me questions and I’ll answer. I’ll tell you right now my experiences are much worse so I won’t sugar coat it.
I have some questions, can I email you?
My pcp says I currently have a type of anemia that stems from low folate serum??? My RBC and B12 are fine but yeah he still says its anemia and prescribed a rx for folic acid. My platelets are in the 400's as well. I think it's time to see a hematologist. Thanks for the push and I'm so glad you're getting better.😀
Do you have a form of MTHFR ? If so u need Methylfolate not synthetic Folic acid. My ins won't cover it . My platelets are now in the 500s and I now have peripheral artery disease.
When I was in preschool I got diagnosed with this then as 2 years past I got another autoimmune and again so I have Evans syndrome but 1 year ago I got it again I went to my doctor's office well my mom took me but anyways I got my test results and my blood was at a 5, they sent me and my mom right to the ER.P.S. this is in 4th grade. Ok no one told the ER I was coming so they didn't get me blood for a long time they didn't think I needed it but they took my blood again and it was danger at a 2 so I got 16 blood transfusions and I was in there for 3 weeks and almost a month they almost wanted me out of the hospital on my birthday witch was in a week. So that's my story
That is scary and ridiculously low for your levels. Glad you ended up being okay!
I had this when I was 3 I almost died because it took so long to find out what the heck was going on.
I was diagnosed with AIHA and I am looking for support groups.
Kelly Vanvalkenburg Facebook has a couple of really great groups
I need support group To i am from Pakistan 21 yrs
I want to share and hear your experience
Can u tell me the diet plan for Autoimmune hemolytic animiea because may dad is suffering from it please reply fast because his blood is dropping down now not so fast but I don't want it to go at the cretical stage
Please reply fast
Unfortunately there is no specific diet plan. With hemolytic anemia your blood cells are being destroyed faster than they can be produced. Please take your father to a medical professional.
@@HealWithSamantha are you still curing from the the hemolytic
What diet plan u take for takel this hemolytic
Hugs babe
Terjemah bhs Indonesia donk.saya penderita aiha.🙏.
Oh my got I just got this right now!!!
My are yellow. But all doctors said it was ok that the sun changed the witness of the eyes throughout years as you age🙁 Anyway blood work was done. I was a 7.9 the following week 7.6. I am now on prednisone 100 mg for a week. My question is how long before my eyes get white again? I am 5 day on prednisone now 🙁
My hemoglobin was 6.3. I refused a blood transfusion and was told it would only make me feel better for a few days anyway. I was on high dose steroids for over six months with the addition of a chemo drug. My hemoglobin is going down again so I think I know what direction the doctor will take. I feel pretty good, so being on any drug is what is destroying my soul. The body is supposed to be able to heal itself
I was diagnosed with AIHA in 2018, like you my ongoing health issue (I have M.E) made me just assume the symptoms were down to that. But the yellow skin, yellow eyes and darker urine that I began to develop made my parents wonder if something else was up. Actually, ,my mum just thought I had terrible make up on at first hehe! Wishing you better day.
please put an arabic translation please i need to understand i lost confidence in myself because my eyes are yellow 💔💔
I am on Rituximab. Are you going to start this?
Wait...they will be giving me this rituximab infusion for membranous glomerulonephritis...Im leaking protein...how long hv you been doing rituximab?? I will get a 1 dose infusion and it will last for 6 months...they thought it was lupus initially but my biopsy tested positive for the MG...very depressing
I will not be on Rituximab anytime soon. They will only start me on that if my current medications (cellcept, prednisone, plaquinel) don't stop me from hemolyzing.
@@HealWithSamantha i my self not Given rituximab because my AiHa relapsed in just within 4 months i am on steroids and cellcept
👏🏽👏🏽👏🏽👏🏽
I have Hemolytic anemia
Hello mam my name is tannu I am 20 years old .and suffering from autoimmune hemolytic anemia .I am gone through spleen removal operation. In front of my parents I do not ask doctor will I get pregnant and have a healthy baby .if u known about this then please tell me .
Yes you will be fine. I had my spleen removed 18 years ago. And I have a 10 year old daughter. I had no problems while being pregnant. You will be fine. Go for it! ❤
@@shellyturbo1 thanks😊
I have very yellowish skin and eyes also my urine is orange. We are so fucking unfortunate
I have AIHA. Auto Immune Hemolytic Anemia. See my previous post.
Coffee tea block assimilation of iron. Copper helps b vitamins stress formula chromium picolanate zink. Most people young and old the heathy have assimilation issues. Aloe Vera increases assimilation 2000%
Bullshit
@@honerdcouster8723 Most people do not have iron "assimilation issues" (those that do are anemic and need iron supplements or treatment of the underlying cause such as with hemolytic anemia) and aloe vera smells nice but does not increase iron assimilation and has insufficient scientific evidence to back up the wonder claims made about it. That is why it is bullshit.
@@underkoffer1621 Aloe doesn't smell nice.I ment assimilation of all nutrients our stomachs aren't efficient that much. The elderly can't suppliment iron but they can damn sure increase assimilation with copper alone for instance. I took high dose copper for a month am no longer bald
What is your fb
Ugh lupus is such a b**ch! I hate this for us. Nothing surprises me anymore with this awful disease. Sending hugs. Will you be seeing a hematologist frequently now or is your rheumy handling it?
Stem cell therapy would possibly cure this.
Lupus sucks. Anemia sucks. You don’t tho lol. Feel better soon girl.🤗
hello you are very beautiful i love you my name is fadi i am from syria and you ?